A Woman's Journey With Rare Disease

It’s A GO…(For Active Listing)

This morning, I decided to follow up with my Nurse Practitioner (NP) at my transplant center about a few things, including the fact I hadn’t heard anything as to whether I was actively listed in the UNOS computer (the official national organ matching computer) yet…

My phone rang about 5 minutes later along with a message that I actually had been put into the computer & listed on March 1 so they can start matching me for 2 new lungs.

Oopsie!

Someone dropped the ball & didn’t call me until 10 days later. I don’t think it was my NP that dropped the ball but someone else. I was a bit livid at first but also relieved because at least I know I’m in my wait period now.

This climb has intensified recently with the pain spikes, increased need of oxygen (especially for sleep), & the draining fatigue. But like most of the time, I find a way to muddle through.

I guess I was technically in end-stage lung disease for at least a year before without realizing it (if you went by my actual lung function numbers on paper) even before I started battling it back in April of 2015. April was when I first noticed my breathing changing again & not rebounding (so credit goes to my lungs who have fought so hard for so long against these damn diseases). They’ve done what they could for as long as they could & continue somehow to do what they can still.

The person that was supposed to have called me to notify me of my listing & then who called when I was communicating with my nurse practitioner then proceeded to leave a very nervous voicemail for me. She transposed a few digits a few times in leaving her call back number.

Then she tried to call me as I was trying to reach her, so I wound up on hold for too long & had to dial back.

Then I received another voicemail telling her that she needed to speak with me urgently which I thought quite funny considering no one showed me any urgency in notifying me of my listing in the first place.

I was upset that I found out I was actually active on the waiting list this way. I didn’t even think to ask for confirmation of what my lung allocation score (measure of where I’m at as far as priority in listing) actually was (which I was curious about).

But, in the end, it’s a relief to know I’ve been in the computer 10 days already.

I’m just glad I didn’t get a call yet because I might not have believed it.

I’m also really happy I followed up today so I could find out & that I didn’t find out on March 23rd at the pre-listing meeting just casually mentioning I hadn’t had an update since my appointment.

I understand things get mixed up sometimes but it threw me off a little. Never once did I dream I’d find out this news this way.

Well, now we know, and here you GO! Let’s hope this is the worst surprise you receive along the way. When you’re safely breathing with your new lungs, looking back on this minor blip will make you smile. As always, Knockin’ Wood 4U!